Hi everyone I'm a newbie here :) just wanting to chat to other thyroid warriors and to see if others have similar experiences...

[robynrose67]

I was diagnosed when I was 18 years old with an underactive thyroid and i'm 31 now. It was a shock to the system because i'd never heard of it or never knew anyone around me who had the condition. I still don't after all these years. No one in my family as far as I know has the condition. So it can be quite lonely to not have others to relate to. Especially getting diagnosed young because a lot of the time i'd get told that's something usually older women get, which made me feel even more alone because i'd think why have i got it now? I didn't feel right for a long time and have had many symptoms; cold hands and feet, feeling tired, exhausted, depression, anxiety and I also had palpitations.

The condition has baffled me for many years and my levels have fluctuated throughout. I've mainly changed to and from 75mg levothyroxine to 100mg levothyroxine as it's gone from high to low. The last bloodtest I had done recently said it was at the top end and I was on 100mg and I have been suffering from palpitations and indigestion feeling as though bubbles where coming up in my chest. Does anyone else suffer with palpitations and indigestion? I'm now doing alternate days of 75mg to 100mg. I don't know the numbers of my results, i find it very hard to understand and just left it to the docs but now i'm trying to think more for myself and keep an eye on my symptoms and how i'm feeling rather than the results. Thanks for reading x

[ShinyB]

Hi there and welcome! Not sure I'd describe myself as a warrior lol, more a disgruntled untreated patient who'll be on the warpath when she's managed to regain some energy and clear headedness

Your dosage sounds low to me. Have you got any recent blood test results (with ranges) that you could add to your post? That will help people help you. Are you in the UK? If so you are legally entitled to a print out of your blood tests results, so just ask for a copy.

Don't let the 'age' thing worry you - it's possible to be born hypothyroid! I'm 51 now and still not officially diagnosed, but I can track my symptoms back to 13 years old, and possibly earlier.

The fluctuating results could be because of Hashimoto's - which is an auto immune hypothyroid condition where antibodies attack the thyroid. When this happens the thyroid will release what thyroid hormones it can, which can temporarily increase your levels. But afterwards you are a more hypothyroid than before. Have you ever had your thyroid antibodies tested?

[robynrose67 in reply to ShinyB]

Hi ShinyB I know the feeling haha!

Yes i'm in the UK, No I don't have the results but I will go to gp and get them though and then post them up!

No i've not had that tested as far as I know I will try and find out. Thanks for the reply. To be honest this is the first time i've looked into it because everytime i did it would just mess my head up. It's hard to understand when your not a doctor but then do they understand!

[ShinyB in reply to robynrose67]

It seems to be pretty rare for a GP to test anything more than the TSH. Ideally you need to also have tested your Free T3 (fT3) and Free T4 (fT4), Antithyroid Peroxidase Antibody or TPO Ab (Ab is short for antibody) and Antithyroglobulin Antibody or TG Ab. Some people don't bother with Reverse T3 - I personally found it useful. Plus there are certain nutrients that are really important in thyroid function so you'd need folate, ferritin, Vit B12, Vit D tested.

You might be able to persuade your GP to get all these tested. If not, you can pay to have a private test done via somewhere like medichecks.com. They often have special thyroid offers on Thursdays!

I've spent most of my life accepting that I wasn't hypothyroid because of that pesky TSH test, even though I had loads of quite severe symptoms. It was only when I did the medichecks test last year that I found out I had low fT3. I've got a big fat nowhere with my GP and an endocrinologist, so am learning what I can here and trying different things...

There seems to be a shortage of doctors who really understand the thyroid. They all just look at blood test results, but it's possible to have normal blood test results and still be hypothyroid! There's one doctor, trained in the old methods before blood tests took over, who I'm going to see next Tuesday. Dr Peatfield in Sussex. He's in his 80s and is no longer a practicing GP. But I've heard many praises sung about him and am really looking forward to it!

[ShinyB in reply to ShinyB]

medichecks.com/thyroid-func...

medichecks.com/thyroid-func...

[robynrose67 in reply to ShinyB]

Thank you for that and for the links I will look into it.

Yes it seems we are just overlooked which isn't right!

Aw that's great ! Good luck and let us know how it goes

[greygoose]

People say some daft things! You can become hypo at any age. I believe I've been hypos since I was about 8, but wasn't diagnosed until I was 55.

Sounds to me as if your doctor is just dosing by the TSH, which is entirely the wrong thing to do. But, they know so little about thyroid. If you live in the UK, you can ask for a print-out of your results, and they can't refuse. It is your legal right to have one. You need to know exactly what your doctor is testing, and exactly what the results are.

[robynrose67 in reply to greygoose]

Hi greygoose Yes they do! about things they don't understand!

I will be doing this when i'm near my gp. Yes i'm beginning to realise that I should understand this more so I know exactly what's going on and how I can feel the best I can. Thanks

[greygoose in reply to robynrose67]

You're welcome.

[eeng]

Many people with hypothyroidism feel better when they go gluten free. Give it a try for a couple of weeks and see how you feel. It might help with the indigestion.

[robynrose67 in reply to eeng]

Hello Thanks for that! I will give it a try!